Caregiver Journey Leads to an International Brain Tumor Patient Organization

September 7, 2018,
by Kathy Oliver, International Brain Tumour Alliance

Kathy with her son, Colin

Credit: NCI-CONNECT

In January 2004, I was catapulted from being a wife, mother and journalist to a role that I never dreamed I would play – that of a caregiver to a brain tumor patient.

My husband and I were sitting in a tiny, windowless room in a London hospital when news was given to us that our 24-year-old son, Colin, had a grade 2 astrocytoma in his left temporal lobe. But we may as well have been sitting on a planet in outer space. We immediately felt like travelers on a strange and surreal planet. We didn’t speak the language of medicine. We didn’t know how to get from A to B. We were filled with fear and dread of the unknown journey ahead.

One of the Cruelest of Cancers

There are more than 130 different types of primary brain tumors and all are considered rare diseases. Brain tumors are no respecter of race, religion, sex, age or geography. They strike all people around the world with the same ferocity.

Brain tumors affect mobility, cognition, personality and behavior – all the things that make us individuals. Patients often experience seizures, which have a devastating effect on quality of life.

There is inequity in accessing promising new therapies. There are misdiagnoses and late diagnoses. There is a lack of sufficient funding for brain tumor research. There aren’t enough clinical trials. Apart from exposure to ionizing radiation and a handful of rare, inherited syndromes, the causes of brain tumors are largely unknown, so there are no prevention strategies.

Brain tumors kill more children and young adults under age 40 than any other cancer. A brain tumor diagnosis can have substantial economic impact on a family as well. Many patients can’t return to work and their partners have to leave their jobs to be a caregiver.

All these things contribute to the nightmare of a brain tumor diagnosis.

Our Brain Tumor Story

As for our own family’s experience, Colin’s symptoms presented mostly as headaches and double vision, which prompted him to visit his primary care doctor. Because he was an otherwise fit and healthy young man and keen mountain biker, the general practitioner suspected it was “just” migraines and duly prescribed tablets, reassuring him, “Don’t worry. It’s not like you have a brain tumor or anything.”

Colin then visited an optician. Within a short time of examining Colin, she feared something sinister was causing the swelling behind his eyes and arranged an appointment with an eye specialist.

The next day Colin was examined by a consultant ophthalmologist who ordered an MRI, which was done within 24 hours. The night of the MRI we received a call from the hospital to say that an ambulance was on its way to pick Colin up because the neurosurgeon was waiting to see him as a critical case.

Thus, we found ourselves in that tiny, windowless room in a London hospital, shocked to the core at the diagnosis and hurtled into the most challenging journey of our lives.

Colin’s tumor eventually progressed to a glioblastoma, the most aggressive and lethal form of brain cancer. He died in 2011 at age 32. During his seven-and-a-half-year journey, he had three neurosurgeries (including an awake craniotomy), six weeks of radiotherapy with oral chemotherapy, followed by 18 additional months of oral chemotherapy, plus treatment with an anti-angiogenic and finally, an experimental therapy.

Colin wrote of his experience, “I think it’s very important for the doctors, nurses and support staff to explain things to patients and their families in a confident, clear and concise manner. It’s also important for patients to be able to talk to the medical staff without any boundaries.” His explanation as to why nurses wore white? “They’re all angels.”

I think it’s very important for the doctors, nurses and support staff to explain things to patients and their families in a confident, clear and concise manner. It’s also important for patients to be able to talk to the medical staff without any boundaries.

Colin

Despite his brain tumor, Colin enjoyed and appreciated life. He had a full-time job with a mechanical and electrical engineering company and loved riding his mountain bike. His pride and joy was his white Italian sportscar, although for long periods of his brain tumor journey he lost his driving license because of his seizures.

But acknowledging that even the darkest, most threatening and seemingly all-encompassing cloud could have a silver lining, Colin wrote, “I now appreciate the finer things in life even more, like the fairer sex, good literature, jazz… and simply breathing.”

Sustaining Hope Through an International Alliance

Over the course of our family’s brain tumor journey, one of the first things we realized was the crucial importance of maintaining hope despite the substantial and numerous challenges of this devastating disease. Knowing that there are determined and dedicated researchers around the world investigating new therapies has always given me hope.

My desire to give hope and support to families on the brain tumor journey helped lead - with a group of other determined patient advocates - to the creation of the International Brain Tumour Alliance (IBTA), a unique global network founded in 2005 as a dynamic worldwide community for brain tumor patient organizations and others involved in the field of neuro- oncology.

The IBTA brings together experience and expertise from all over the world with the aim of enhancing the well-being and quality of life of brain tumor patients and their families. We have alliance supporters in 111 countries. Across the globe, we work on a wide range of high level projects to benefit the brain tumor community while at the same time disseminating knowledge, information and best practice to help shape health and research policies at national and international levels.

Proud to Be Partnering with NCI-CONNECT

To further engage with brain tumor patients, the IBTA is very proud to be associated with NCI-CONNECT.

Partnership initiatives like NCI-CONNECT bring us additional hope that there will be improvements in treatments and care for brain and central nervous system tumor patients.

In the brain tumor world, innovative approaches to research, care and support must be implemented. Progress should be made at a faster pace because people with brain tumors and their families don’t have the luxury of time.

International collaboration is absolutely key to achieving much better outcomes in this disease. We can all play a part here. As patient advocates, healthcare professionals, researchers and those involved in all other aspects of neuro-oncology, every morning we should ask ourselves, “What can I do for brain tumor patients today?” And every evening we should ask, “Have I done enough?”

Kathy Oliver is chair and co-director of the International Brain Tumour Alliance (IBTA)